Month: March 2017

I brag about the unicorns and talk about the rainbows because people don’t want to hear about the rest.

March has been our month, lots of magical 100s popping up on our blood sugar checks. First month out of honeymoon, I’ll take it. I consider this awesome because our kiddo doesn’t have a continuous glucose monitor (cgm) that tells what her blood sugar levels are every 5 minutes. We still do the old school, poke her finger and check, up to 10 times a day, to see where her levels are. I guess this does give us more of an opportunity for that magical number to appear on the blood glucose meter. Despite this month’s pictures and triumphs — it’s not all rainbows and unicorns. Shocking, I know…

I brag about the unicorns and talk about the rainbows because people don’t want to hear about the rest.

No one wants to hear about feeding our daughter smarties at midnight for a low of 67. Two rolls to get her blood glucose above 80, this is followed by one half cup of whole milk to keep her stable through the rest of the night. Knowing that Fairlife milk has just the right mix of fat and protein without a ton of carbs. Setting an alarm, which is really just a formality, we don’t fall back asleep because if her level drops too low again she could have a seizure or simply never wake up, to recheck in two hours. When her blood glucose is over 150 at this point, then we can settle into a semi-restful sleep.

No one wants to hear about the midnight checks when her blood glucose level is over 350 for no apparent reason. We program in a correction dose of insulin and deliver it to a sleeping child. Set an alarm, once again this is just a formality, as no one is going back to sleep, for one hour later. We recheck to make sure that her levels are coming down, we need to rule out the possibility of a bad pump site, yet make sure that her blood glucose isn’t dropping too rapidly. We need to make sure she isn’t heading into the realm of diabetic ketoacidosis (DKA). Then the alarm is set again, this time as long as the number is good, we will fall back asleep, only to wake up in 2 hours to make sure that she’s stable at the 3ish hour mark after receiving the correction.

Oh and don’t worry, she’ll be waking up at her usual time, around 0730am, because she doesn’t arouse for finger pokes any longer. She has even learned to eat smarties in her sleep and won’t remember it in the morning. We wear the headlamp and fumble around with the glucose meter, poker, test strips, and a cotton ball. We are the ones who appear tired during the day, have dark undereye circles that don’t ever disappear, and secretly long for a child who takes naps. I’m lucky that I have a great husband who shares the duties and is willing to trade-off nights so we both can get some sleep and have some semblance of normal.

Sprinkle in the fact that Frankie is a typical three year old. She is testing her boundaries. Her current specialty is drawing out bedtime to over an hour, more books, potty time and water breaks. She is throwing the occasional temper tantrum, often because we won’t let her do something pretty dangerous, or simply because I don’t want to push the fucking car cart at King Soopers. Oh and to top it off she is feisty as hell — I wonder where she gets that.

This is just a sneak peek into our lives. It’s the hand we’ve been dealt and we are trying to play it well. Doing this all while maintaining our friendships, sense of humor, and our relationship. We’re also trying to raise a well-adjusted tiny human who looks at the world around her with amazement and curiosity. All of this means my coffee habit has exploded from something I simply enjoyed at a higher than normal level to something I need at a higher than normal level in order to simply exist in my life. And I drink it black, because who needs sugar when your life is engulfed in rainbows and unicorns.

This is our daughter. This is our daughter on steroids. Any questions?

Monday my little one woke up with a unicorn. A perfect blood sugar of 100, that we actually happened to catch on the meter. My philosophy “this is a great omen for the rest of the day”. Boy was I wrong. Around 3pm, she curled up on the couch and took a nap — this is very out of character, but she had a big weekend, I thought maybe it had finally caught up with her. Around 4pm she woke herself up struggling to breathe with a barking cough. I picked her up and she was burning up, checked her temp, fever of 103.7F. I called the pediatrician and gave liquid ibuprofen (which I forgot to dose for in all the frenzy that followed). I knew in my gut I needed to take her in, but I needed the nurse on the pediatrician’s call line to tell me. There was no mistaking that barking cough and stridor, our kiddo had croup.

We have been lucky enough that we have avoided respiratory viruses and most viruses in general throughout her 3 years. The occasional cold and/or runny nose, but nothing serious. Of course the pediatrician’s office was closing, so we had to head to the ER. At the ER she got a dose of liquid acetaminophen and a dose of oral liquid steroids. Her stridor had gone away, so no need for a breathing treatment. The ER physician called the endocrinologist on call, who spoke on the phone with me about the plan of attack for dealing with the steroid induced high sugars that were sure to ensue. We felt confident going home and ready to tackle the next 72 hours.

The next day, I went to work and my husband stayed home and battled sugars, increasing basal rate every 2 hours and giving lots of corrections. Our kiddo was cranky most of the day, as you would be if your sugars were running double what they normally do. Steroid induced high sugars are stubborn. He ended up running the pump at a +100% temporary basal. This got her glucose levels below 200 and she started feeling good, running in circles around the house and singing at the top of her lungs — oh, this is our kid hopped up on ‘roids. The stubborn highs and increased insulin needs lasted about 12 more hours and then her sugars started coming into her range without the temporary basal on the pump. This is our daughter. This is our daughter on steroids. Any questions? It made us realize steroids and illnesses are temporary and we can tackle them head on. You need to and are able to throw large amounts of insulin at high sugars. I relayed our story to a physician I work with, who also has a daughter with Type One, and his comment was “It really makes you have a whole new level of respect for the pancreas.”

Which made me realize another thing we fail at miserably as healthcare providers when it comes to treating Type One diabetes. We are always seeing doses and making assumptions. We only want to look at the numbers, the numbers of basal, numbers of corrections, insulin to carb ratios. We are judging the patient who has larger insulin needs, they are getting labeled non-compliant or brittle if their needs suddenly increase drastically while hospitalized or ill. Larger insulin needs just means your body needs more insulin than the patient down the hall. Reality is no one knows the exact average number of units of insulin any given persons pancreas excretes at any given time to deal with all life throws at it. The number of units only reflects the patient’s magic number, the number he/she needs to keep their glucose levels in range. The number is completely arbitrary. After honeymoon my daughter’s insulin needs doubled, they increased to 8-9 units a day, during illness she received 17 units. At first, I freaked out, she’s so little, that’s so much insulin. Then I realized, oh well, it’s the exact amount she fucking needed.

Then, I made a mental note, I’m never going to comment on any patient’s insulin dosages. Unless it is to question why the dose is changing drastically while in the hospital (that is the number one thing providers like to do when diabetics get admitted — they like to change their doses). Patients are on the exact dose that they need. I’m going to be a more empathetic nurse, dealing with this disease on a daily, hell hourly basis is really hard. It takes a serious mental and emotional toll, I can only imagine the physical toll the person with the disease also endures. Who are we as healthcare providers to make anyone feel guilty or judged for doing exactly what their body needs? My number one take away this week, it doesn’t matter what dose of insulin they need to keep glucose in their range. All Type Ones have a useless pancreas. An organ no one thinks about until it doesn’t work. My daughter has a broken pancreas, she doesn’t make insulin, she wears her pancreas in a fanny pack around her waist. Her pancreas just happens to be pink and makes her smile.

Oh, and that magic unicorn that she had at the beginning of the illness, she had another one this week. On the day all of the steroids wore off, this time right before dinner. Unicorns aren’t good omens, they’re mythical and magic and make us all feel good inside. That’s why we brag and post and cheer each other on when we find them.

It’s an odd feeling, for months it was all we could talk about in our house. Questioning how long it was going to last…

Well, it’s official, the honeymoon* is over. There is a part of me that is letting out a big sigh. I’m not sure if it is a sigh of relief that we can start battling diabetes without the bum pancreas excreting random insulin or if it is more a sigh of reality finally setting in, again and with a vengeance, our 3 year old’s pancreas is legit broken. I mean we knew it was, but now it’s more obvious, numbers higher than we have seen since she was first diagnosed.

It’s an odd feeling, for months it was all we could talk about in our house. Questioning how long it was going to last, thinking it was ending only to face lows after making basal adjustments. We talked about wanting it to end, so we could start to make the needed adjustments and settle into a bit of an insulin routine. We wanted it to end so we could feel more comfortable teaching others how to care for her when she is away from us. Hoping that some semblance of normalcy would indeed happen. Like when all her beta cells ceased to exist this magic switch would be flipped and diabetes would be easy to control. Ha! Like somehow after the honeymoon ended the diabetes gods would decide we have learned enough, we have grown, we have passed some imaginary test and poof — great control with little effort. Ha!

Honestly, we knew that that wasn’t going to be reality. But hey, a girl can still dream, right? We know that this disease is all about testing. Testing blood, testing the right insulin dosages, testing the right foods, testing the right correction factors, testing the right amount of time to wait between dosing and eating. It is also all about testing us. Testing our patience (mine runs very thin and my husband is a saint), testing our coping skills (those need some work), testing our support system (we should reach out more frequently, but that means we have to admit we need help) and testing how little sleep we actually need (that answer, more than we are currently fucking getting — we aren’t 20 any longer). All this testing sucks, it sucks for her and for us.

Diabetes also likes to keep us on our toes. When we think she’s going to go low, she goes high and vice versa. Just when we think we have ratios and corrections figured out she becomes more carb sensitive and less insulin sensitive. Just when we think she isn’t going to eat the entire meal, she asks for seconds (but I’m not going to complain about an increased appetite and the growth spurts that go along with that. Although they do wreak havoc on blood glucose levels). The constant inconsistencies are what make this the hardest. I’m hoping that we will see some improvement in these with the end of the honeymoon. Our biggest triumph this week was that she played at lil monkey bizness for 5 hours without going low. She was running, jumping, climbing and giggling. She looked like every other kid out there and stayed in range the entire time. It was really great to not have to force feed her smarties and to be able to chat with my friend while the girls ran around.

Someday this is going to be easier — at least that’s what more seasoned parents have told us. The ones who have been here before. I really hope they are right. Strangers have no reason to lie to us; they’ve been in our shoes and know how hard the beginning is. Maybe they just don’t want to be brutally honest, maybe they don’t want to discourage us knowing how young our kiddo is and how long this journey will be. I’m going to be optimistic and believe them when they say it’s going to get easier — it has to, for her, for us, for my sanity.

Rocking the tutu and fanny pack while flying down the slide. No lows. Wooohooo!!!

*Honeymoon is the period of time between enough of the beta cells being killed off that diagnosis occurred and the destruction of the rest of the beta cells. Because the pancreas is getting outside help from insulin injections the remaining beta cells start to produce more insulin. This causes insulin needs to greatly decrease. Honeymoon phases tend to be shorter the younger a person is diagnosed and varies immensely from person to person.